The Australian Sjögren's Syndrome Association
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Peripheral neuropathy

Hi all. Ive got SS and get the neuropathy with it. 

What id like to know is does it cone & go. ? Will i always have it. 

Is there anything that makes it worse?

Im on pregabalin but that just makes me sleep. I'm due to go back to work next month I do office work and I'm right-handed and my arm feels no better than it did six months ago . Not to mention the tendon pain everwhere! waiting to be sent to the pain clinic but again that's a long wait 😕

9 Replies

Hi Dani, what you doing on this forum then. The best person to ask about this is 

Barnclown on the Lupus website and also lots of people on that site also have SS.

The other is Twitchytoes Pheripheral Neuropathies if I remember rightly.

If you go in via the private message it would be easiest for you to get them.

Take care and hope you are feeling better soon

Love as always noonoox😎


Hello love. In feeling a bit down & fed up. Oh i thought wen you put a post up it goes to all forums.  Ok thanks. Il msg them. Hope your ok hun xx


Hi, not sure don't think so, try private message.

Read some of Amanda's funny side of lupus may cheer you up.

Take care and rest otherwise you won't be going back to work.


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I no thanks noonoo xxx


Forgot to say they are extremely knowledgable about these subjects so worth getting hold of them.


I felt better with hydroxychloroquine

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Hello Dani83. 

My neuropathic pain has been with me 24/7 for the past eight years. That is not to say that it is always at the forefront of my awareness as I try to keep occupied. Tiredness and exercise make it worse. 

I take my full daily dose of Pregabalin (Lyrica) 300 mgs just before bedtime. That way I sleep well and am not 'drunk' or ataxic during the day whereby I can't walk in a straight line. It works for me!


Wow 24/7 thats a long time. Im hoping in a way it will go its in my right arm which is horrid. Xx


What you need to do is have acupuncture and regular massage especially the hand and arm region I was a florist and that helped me as for the pain drink carrot,celery and cucumber juice every day or take 3,000mg of grapeseed in capsule form till the pain sup sides then reduce gradually to one a day as a maintain dose.

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